Myrke was told that her 11-year-old daughter has a gluten allergy. A diagnosis that has a major impact on her entire family. “My heart broke when the doctor explained that her bowels were very sick.”
After a few weeks we got a call:she had celiac disease † We never thought of that. We were relieved that it wasn't a serious illness that the doctor had previously thought of, but we didn't know exactly what it was or how it would affect our family. My heart broke when the doctor explained that my daughter's intestines were very sick. Because she had eaten gluten all her life, they were damaged. They stopped absorbing nutrients, so she didn't grow properly. It explained her low energy level and why her growth curve was good from birth to about five months, but then went down and remained low. From that age you give a child solid food, such as bread crusts and breadsticks. Had I poisoned my child for eleven years? If I had known she was born with a gluten allergy, I would have done it differently, although it makes no sense to think so. Many people with celiac disease have no, mild or vague symptoms. If we hadn't followed through with that school doctor, we wouldn't have known. A sad idea.”
“From one day to the next, Josephine was no longer allowed gluten. We were also told that we should take her to the pediatrician every three months for a blood test and to see if the celiac disease antibodies had already fallen. These should gradually decrease on their own when you stop eating gluten. We were referred to a dietitian at the hospital who would help us on Josephine's strict, lifelong diet. That means more than 'no more eating bread'. When shopping you should read all labels, because gluten is even in most stock cubes. If it says 'may contain traces of gluten', we can't use it.
Gluten-free bread is not very tasty, but after a long search we found one type that Josephine likes. We have two versions at home of all spreadable products, such as butter, peanut butter and pasta:regular and gluten-free. Her name is on all of Josephine's trays and pots and we are absolutely not allowed to use them. If you first spread your sandwich and then your knife in a gluten-free peanut butter stops, crumbs come with it.
Eventually Josephine would still regularly ingest gluten. This would keep her intestinal wall irritated and damaged again and again. Even a small amount of gluten can cause intestinal damage, even if someone has no noticeable physical complaints. In the long term, it can even lead to fur descaling. So we use separate breadboards for gluten-free food and have even bought a separate oven. We recently realized that we should also clean the cutlery drawer weekly to prevent its cutlery from coming into contact with gluten through crumbs.”
“Making dinner takes more time and energy than it used to. We do not eat gluten-free with the whole family; it's too expensive for that. But apart from that, we have it pretty much under control at home. Every Wednesday Josephine makes a tin with yogurt and banana or gluten-free bread, so she has the freedom to have lunch and play with someone after school. But when it comes to spontaneous actions, it becomes difficult. We have already been to one lunch place six times because they have a gluten-free bagel, we will never go to other restaurants again because there is nothing on the menu without gluten. Sometimes things go wrong, like last week:I had called a restaurant in advance and they would have gluten-free pancakes. That turned out not to be the case. Josephine ended up eating tomato soup, rice, and fish while everyone around her ate burgers and fries. That made her a bit sad.
When her sister, my husband and I showed no antibodies after blood tests, she was disappointed:she had hoped that one of us had it too, so that she was no longer an exception. Her luck is that she is a bit older, so she can check labels in the supermarket herself and ask what is in something. Her diet gives her structure and rules are rules for her. She had recently eaten chocolate spread, which later turned out to contain "traces of gluten". She felt so bad about this that she immediately ran to the tap to rinse her mouth. So I'm not afraid that she secretly eats gluten with a girlfriend, no matter how delicious she likes donuts and tompouces. I just wonder how it will go when she goes to college later:one beer or pizza and the antibodies are back in your body and can destroy your intestines again. You have to stand firm, especially if you don't get any stomach pain or diarrhea.”
“Since Josephine no longer eats gluten, she seems to have more energy and feel better about herself, although her body is only 'clean' after six months to a year. She will not catch up with the growth retardation she has incurred, but she can still get the growth spurt that every adolescent gets. I hope she is healthy as soon as possible. Many people seem to underestimate this disease, because they know too little about it or see it as a health hype. They say:"Oh, what difference does that one time make?" or ask if my daughter really has celiac disease. Why would I invent such a thing? Nobody wants this for their child. It is not a poseritis, but a disease that, if left untreated, can even lead to colon cancer. I think it would help a lot of people with celiac disease if those prejudices were gone.”
What is celiac disease?
Celiac disease is an allergy to gluten, a protein in wheat, rye, barley and spelt. If patients ingest this, the mucous membrane of the small intestine is damaged and the intestinal villi are destroyed. This can cause abdominal pain, diarrhea and constipation. In the Netherlands there are about 25,000 people with this disease, although the actual number is probably higher because complaints are not always recognized, are mild or are not forthcoming. The cause of celiac disease is still unknown, but heredity plays a role. The only treatment is a lifelong gluten-free diet. If the complaints persist or worsen despite this, it may be a case of the rare refractory celiac disease (which mainly occurs in a diagnosis at a later age). Do you suspect you have celiac disease? Your doctor can do a blood test to see if there are any gluten antibodies present.
Source:Stomach Liver Bowel Foundation
The symptoms
Some of the most common symptoms of celiac disease include:anemia, chronic diarrhea or constipation, foul-smelling stools, abdominal distention, loss of appetite, vomiting, being underweight, strong mood swings, stunted growth in young children, delayed puberty, infertility, osteoporosis, and tooth enamel abnormalities .
Source:Dutch Celiac Association, Maag Lever Bowel Foundation Text:Kim van der Meulen, Image:Getty Images
